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Session 4: Rare Disease II: The Patient Story
Session Chair(s)
Mariette Boerstoel-Streefland, MD, MBA, MS
Senior Vice President, Worldwide Safety Officer
Bristol-Myers Squibb Company, United States
In this follow-on session from the previous one we are looking at rare disease from the patient’s perspective. A patient and their caregiver will each share their perspectives on the journey of living with a rare disease, and provide insights in the challenges of getting diagnosed, finding and getting access to the right treatment, accepting uncertainty about benefit and risk, and dealing with potential side effects. This session should allow the audience to switch lenses and step outside the shoes of the safety professional into that of a patient and their caregiver.
Speaker(s)
Rare Disease II: The Patient Story
Donna Kolp
The Atypical HUS Foundation, United States
Social Media Director and Board Member
Rare Disease II: The Patient Story
Bethany Lovegrove
United States
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